Lactivists, both laypeople and professionals, have built a movement predicated on the claim that “breast is best.”

That claim that is at odds with everything we know about reproduction — there’s an incredible amount of wastage and death associated with producing the next generation — and the historical reality of cemeteries filled with the bodies of babies and mothers who died in childbirth or shortly thereafter.

These injuries and deaths did not happen until hospitals and providers began aggressively promoting exclusive breastfeeding.

For the past few decades, the reaction to this scientific and historical reality has been limited to denial, albeit a particularly ugly form of denial. Lactivists have propagated the lie that insufficient breastmilk is merely an excuse for not breastfeeding, since every woman can make adequate milk if she just breastfeeds harder.

This ugly edifice of denial is beginning to crumble under a large and growing body of scientific evidence that 5-15% of women (or more) can’t produce sufficient breastmilk and that nearly half of all babies might benefit from supplementation with formula at some point (generally in the first few days of breastfeeding). Even Kate Tietje, Modern Alternative Mama, has been forced to acknowledge the truth that insufficient supply really happens, and is relatively common. Don’t worry, though, she has come up with a more subtle way to blame others for their difficulties.

The author goes on to explore her own story … After four days, they discovered that baby was hungry and mom wasn’t producing well, and then that she wasn’t producing at all. By that time, baby had become severely hypoglycemic and dehydrated, and ended up suffering brain damage from it.

The tale is a cautionary one: the author states that up to 20% of newborns are vulnerable to under-feeding and the severe effects that can come from it, and that it happens almost only in exclusively breastfed babies. Therefore, she concludes that the current breastfeeding education is inadequate, monitoring of at-risk newborns in inadequate, and that the idea that exclusive breastfeeding is the best/healthiest way is based on a naturalistic, magical-thinking point of view.

Tietje reflects on these tragedies and decides … it’s the mothers’ fault!

This tiny study notes that hormonal issues may play a role. This study notes that obesity may cause milk production to be delayed or non-existent (which makes sense, since obesity is often hormonally-related)…

This study says that disruption of a mother’s circadian rhythm, which is related to hormonal disruptions, can delay milk supply.

This study notes that women who received pain medication in labor were approximately twice as likely to experience delayed lactation vs. women who had none, regardless of birth method. (Mothers with an emergency c-section with epidural and other medications were three times as likely to have delayed lactation.)

This study shows that up to 44% of mothers can experience delayed lactation — I believe this was cited in the author’s original post. What the author didn’t dive into was the causes, but the study does. Six factors are related to delayed lactation, including maternal age of 30 or older; being overweight or obese; larger-than-average baby weight (greater than 7.9 lbs); absence of nipple discomfort on days 0 – 3; and infant failing to breastfeed effectively at least twice in the first 24 hours.

See? It’s not breastfeeding; it’s those fat, lazy mothers who had pain relief in labor!

But those are not causes, they are risk factors. And what’s a mother supposed to do about her age, her baby’s weight, and being a first time mother? Tietje offers no solutions since there are none.

I was turned off by the original author’s suggestion that we ought to be “alarmed” by this, and her refusal to take into consideration any risk factors that may have played a role in what happened…

Maybe Tietje doesn’t think that we should be alarmed by preventable infant injuries and deaths; I can’t imagine a better reason to be alarmed. These are IATROGENIC injuries and deaths. They would not have happened, and did not happen, when hospitals and providers were not aggressively promoting exclusive breastfeeding.

Tietje insists:

It’s important not to let information scare us. It’s important not to walk away with only “some” of the facts. We need a clear and more complete picture of what is happening, so that we can identify at-risk moms and babies, and take measured steps to prevent these outcomes, or to intervene if they occur anyway.

Preventable infant injuries and deaths SHOULD scare us, and we should be horrified that these are iatrogenic injuries and deaths. Breast is not best for all babies. Our insistence on promoting a process (breastfeeding) over outcomes (healthy babies) has led us to this point and we need a serious adjustment in the way we treat and counsel new mothers.

We should recognize that hospital readmissions for jaundice and dehydration, as well as brain injuries and deaths are iatrogenic injuries. We are CAUSING them and therefore, it is up to us to prevent them.

The job of health care providers is to nurture babies, NOT to promote breastfeeding, and the sooner we recognize and acknowledge that, the sooner we can put an end to preventable injuries and deaths.

It makes me so angry, because my first boy, we had so much trouble, and even though I really wanted to breastfeed, he was just hungry, and my mother and another influential older woman in my life said, “I know you want to do this but that child is hungry and he needs more.” I listened, and I’m glad I did. That boy had to go on solids earlier, too, and I am glad I did everything I did in regard to feeding him. I don’t see any purpose in starving a little baby. I’ve been for real hungry and I know how much it hurts, and it’s wrong to do it to a little child if you can prevent it. Also, ironically, with my second sweet boy, breastfeeding was magical and no effort at all (it was spooky)–and then he died at 3 months, and his father and I were devastated and lost for a long long time. I wish they’d get that it’s not the goddamned philosopher’s stone. Just feed the baby, and enjoy this time if you can (it can be hard, lol). You never know what fate is going to throw at you.

Sue

Tietje says “disruption of a mother’s circadian rhythm, which is related to hormonal disruptions, can delay milk supply”

What mother of a newborn DOESN’T have “disruption of her circadian rhythm”?

This ex-music teacher blogger has no idea at all. None. And yet she ponitificates.

But if you have a c-section you will have analgesia. Which is a big no-no if you want to be able to breastfeed.

Roadstergal

It does make sure you have all the placenta removed, which isn’t a given otherwise, and can delay milk production. C/Ss to promote breastfeeding! :p

Azuran

I you were truly a good mother: meaning that you were a holistic, GMO free, vaccine free, organic, medication free, perfect weight mother. And if you actually really wanted a baby and also trusted birth 200%, meaning absolutely no prenatal medical check-ups and a 100% natural home birth.
Then your labour would synchronize itself with your circadian rhythm and would start in the late morning, you would then have a short, easy, absolutely painless labour, which would end some time before dinner and leave you feeling refreshed. Leaving you time to bond properly with your baby as you breastfeed it easily and without any pain. Then, as night will come, you will sleep with your baby right next to your breast, so it can feed at will during the night without either one of you needed to move or wake up.
If it doesn’t happen like this, it’s because you are doing it wrong, #shitmom
:p

CanDoc

Yes. I come here for my own sanity. Our hospital is wild about the BFI and I feel like I’m screaming silently into a vacuum where nobody believes me, nobody listens to me, everybody assumes that I’m anti-breastfeeding. But I’m just PRO SAFE BABIES. Thank you. May your message spread.

Sue

I work in an ED in a suburban community with many recently-arrived migrants from war-torn areas. They do tend to have a tight family structure and although mothers are generally young, they have a lot of support around them.

Interestingly, these women tend not to agonise about baby-feeding. Their babies are generally beautifully nurtured.

OT: I went to pick up my 9-month-old from day care this afternoon and found him sleeping on his stomach. I asked his caregiver if she’d put him down like that and she said no, that they have been laying him on his side and letting him flop over on his stomach. They say he won’t nap on his back (he does at home, but admittedly is not a great napper).

So, should I put a stop to this? On the one hand, he’s 9 months old (almost 10). On the other hand, he doesn’t roll over yet. Neither front-to-back nor back-to-front. He was evaluated 2 months ago for a gross motor delay and was found not to have a delay. He sits, he cruises, but he doesn’t roll or crawl.

I’m going to send a note to his pediatrician as well, but I suspect she will classify this as a parenting decision and tell me to do what makes me most comfortable.

What do you think?

Kelly

I would think it would be ok since he would be able to move himself if needed. If he cruises, he is strong enough to move his head where he can breath.

Thanks. He’s definitely strong enough and in control enough to move his head. I don’t know what’s going on with the not-rolling-over thing. The physical therapist who evaluated him said basically that it’s a little weird that he’s not doing it, given the other things he is doing, but that he’s basically fine.

Irène Delse

Kids can have weird differences in development like that. My niece never crawled before she learnt to walk! She started getting up by herself around one year of age, pushing on a chair or on the wall, and look around, obviously checking her balance. Then, some time later, she started to take tentative steps while clutching a parent’s hand.

Before managing to stand up, she had been uninterested in crawling. Only scooted on her stomach a little. But she started trying to climb furniture before she could walk (to the terror of her parents).

Charybdis

DS never crawled. He would sort of scootch and pull himself forward on his arms. He would sit up, bend one leg in towards the other one making a figure 4. He would then lean forward, plant his hands and scootch himself forwards. He was REALLY fast with it.

demodocus

Mine refused to cruise or crawl for ages, until he *really* wanted to see what his big cousin was doing when we visited. Maybe he just doesn’t feel motivated. Personal opinion, I think your kiddo’ll be fine.

Who?

My son crawled from about 6 months and was climbing everything by 9 months. One of his first words was ‘get down’, since we said it to/around him a lot.

He didn’t walk untl 13 mths, when we went on holidays with friends with a child the same age, who was walking. I think it honestly hadn’t occurred to him to do it until then.

Thanks, that’s what I’m thinking too. It was just jarring to see him sleeping on his stomach since I know he didn’t roll over himself.

CSN0116

(Holding my arms up in the air like I’m being told, “Freeze! You’re under arrest!)

I stomach sleep my kids from birth, well before they could ever put themselves in the position. I’m aware of the SIDS risk, as well as the (completely ignored) risks associated with copious amounts of lost sleep from forced back sleeping. They sleep soooo much better on their tummies so, meh…

MI Dawn

Mine did, too. But that was before the “Back to Sleep” days anyway. Younger daughter slept on her tummy in the baby crouch until she was about 10…

CSN0116

“Back to Sleep” turns me into a conspiracy theorist. When I realized my firsts (twins) would not back sleep and went looking to understand the actual risks involved in belly sleeping, I uncovered the fuck ton of code shifting involved in the “50% reduction of SIDS deaths” (coupled with the simultaneous decrease in maternal smoking rates)and about fell over. It’s Breast is Best’s cousin, I swear it.

(putting tin hat back into the drawer now)

Heidi

Once we had to get rid of the swaddle sleep sack, the only way my husband, baby or I were going to get any sleep was to put him on his stomach! Sometimes, he’ll put himself there, but sometimes, he won’t and instead wakes up and stirs the whole night through. The only way to get him to sleep on his back was in a reclined Fisher Price infant to toddler rocker but our pediatrician said that was dangerous. I know they mean best, but his advice of just put him in his crib on his back and walk away did not work at all. After trying that for a few nights, none of us could take the sleep deprivation!

Heidi_storage

Too right. Do they understand how hellish it is for everybody–including baby–not to sleep?

Chant de la Mer

I’d like to hear more about this, I mean if it really isn’t helping then by golly I’d like to know!

CSN0116

Well the biggest confounders I found were: (1) a simultaneous decrease in maternal smoking rates (1990’s), which has always been a known SIDS risk factor, and (2) simultaneously, the criteria needed to list SIDS as a COD on a death certificate became much more rigid.

In short, a lot of cases prior to “Back to Sleep” were quantified as SIDS when they were actually suffocation Or accidental injury (or even homicide in some cases). Redefining the diagnostic parameters created the *illusion* that Back to Sleep cut deaths in half, when in reality it likely had a very minimal effect (and is not worth torturing babies and parents over if their kid won’t go for back sleeping)… which would also explain why countries who have “totally unsafe” sleep customs, per Back to Sleep, maintain low SIDS rates, because sleep position could have little to do with it, but accurate, consistent record keeping appears pivotal to understanding true risk.

This is truly shocking to me. It makes me realize that I have treated “back to sleep” as received wisdom – is the evidence really that scanty? Wow.

fiftyfifty1

” is the evidence really that scanty?”

No.

Chant de la Mer

From what I can remember, there was a huge reduction because of the change in classification but that reducing suffocation risks was still considered SIDS prevention because the current theory is that something is not functioning correctly with autonomous breathing in susceptible infants. I cannot remember where I read it, so I can’t say if it was reputable, but I think that for young infants being face down caused a build up of CO2 and that triggered something that caused them to stop breathing. Sorry I can’t remember or explain any better, the technical terms and processes are escaping me at the moment.

AnnaPDE

I remember it being a lack of reaction to the CO2 buildup — usually one would wake up or at least go *snort snort* and move into a different position. But apparently some babies’ nervous system isn’t mature enough to get them out of really deep sleep. Putting a baby on their back would then help by keeping the nose/face as well ventilated as possible, the head in a position where it’s easy to move, and generally in a position where they’re pretty likely to squirm/startle themselves out of really deep sleep every so often. (The latter is what people then try to prevent by swaddling — babies who sleep on their stomach or side mostly do it without big startling wake-ups.)

Irène Delse

That’s interesting. I remember a couple whose baby girl had trouble to sleep on her back. Around four months of age, she started using the side of her crib to push herself on her belly! The parents were alarmed, at first, and asked the family doctor what to do. He reassured then that since the baby was able to turn by herself, there was little risk of suffocation. He added that babies with colic may feel better on their bellies. In any case, the parents felt better and let things stay.

Heidi_storage

After two weeks in which Daughter got no more than 60–90 minutes of sleep–ever–I put her on her tummy. I had a terrible dream she died of SIDS. Then I woke up and saw that she’d slept 3 hours for the first time ever, and I kept her on her tummy. She is now almost 3 and doing fine. I made my son sleep on his back, though.

MI Dawn

I had a kid who refused to sit well beyond the natural age. She’d sit in a high chair, or on a lap. Just not unsupported (needing, for example, to use her hands for support/steadiness). The pediatrician checked her out, laughed, and said “she’ll sit when she’s ready”.

Ready turned out to be 8 1/2 months of age, when we were all sitting on the ground outside, and my brother offered her a chicken leg bone to gnaw on. She sat perfectly straight and steady, like an adult.

Kids do the darndest things. Yours may never roll. If he’s cruising, he may just not bother.

That’s what we’re thinking. And he’s going to start crawling when something across the room is just too exciting to hold back.

baileylamb

My son was cruising before he sat. He rolled over at 7 weeks, started crawling earlier walked at 11 months… buy he just would not sit on his own. He finally learned bc he got tired of falling backward (in his crib) to get down from standing.
Kids are weird.

Megan

I would base your decision on his ability to get out of a position that would compromise his airway. If, with his gross motor delays, he can still easily lift and turn his head, it’s less of a risk. Also note the risk for SIDS goes way down at 6 months. It’s obviously your decision. I personally remained irrationally paranoid about SIDS up until a year with my first and made sure to put her down on her back and had nothing (and I mean nothing) else in the crib until she was a year old (at which time I introduced a blanket). She still flipped over to stink bug position as soon as she could. I then left her that way. I’m less worried this time around though we are in that stage where my youngest can roll from back to belly but not back the other way yet, so that worries me. You can still minimize other SIDS/suffocation risks even if he belly sleeps, like no blankets, bumpers, etc.

Megan

(I see below that his lack of rolling over was felt to not be a problem by his PT so please don’t be offended by me calling it a gross motor delay. I see now that you’ve been told he’s fine, which makes the belly sleeping even less of an issue IMO.)

Thanks for your kind words. And I’m not offended at all – even though he doesn’t technically have a delay, 9 months with no rolling is worrying me a little.

Heidi

So long as his sleep surface is firm and doesn’t have any pillows or plushies in it, my unprofessional opinion is it would be fine. When my son was just a few weeks old, my husband had him in his playard bassinette for tummy time and absent-mindedly forgot about it. I found the baby face down but he was breathing just fine. Since the surface was hard, it didn’t conform to his nasal passages and obstruct his breathing. I now put him on his tummy to sleep and have been since 5 months old. He was rolling both ways by then, but I think the bigger deal is if he moves his head to the side if his breathing does get obstructed.

Squirrelly

My baby learned to roll back to front several weeks before she figured front to back. This made me super nervous and I lost a lot of sleep checking on her and rolling her back, but when I talked to the pediatrician she said not to bother. At 9 months and sitting/cruising I doubt you have to worry about it either.-

AnnaPDE

I’d say it’s completely fine, if he sleeps better on his side then go for it. (I know my LO does — he’ll squirm and toss on his back, and sleep peacefully as soon as I turn him on his side.)
The SIDS thing is really overrated IMHO, and the stats are pretty dodgy, just as CSN0116 explained.

So Amy, I saw your piece on Psychology Today and while I understand the gist of what you’re saying, I disagree with a lot of it. I’ve been on a diagnostic merry-go-round with my son since the age of 2 and there’s an even split between dueling experts with different diagnoses (falling into loosely two camps of yes it’s ASD, no it’s not). All of these are reputable clinicians from major university affiliated hospitals–including two from the same clinic who disagree with each other. The differences in diagnoses are significant because they are treated differently (meds vs. no meds, different types of meds, different types of therapies, etc). It’s fucking exhausting to deal with. I’ve gotten to the point where I just weigh all of the offered options and go with the ones that I think fit best for my kid. I’ve had to say no on some interventions and fire clinicians who try to force their POV on us. I’m about to fire one now who isn’t listening to us.

Of course, your overall point is sound, which is parents shouldn’t ignore a diagnosis because they are embarrassed to have a kid with special needs. But the way you wrote it WAAAAAYYYYY oversimplifies the issues involved. It’s a complex ball of suck in many ways.

I saw that piece too, and I think the fear of “labeling” is a little more legitimate than Dr. Amy gives it credit for. Schools track kids according to perceived ability and temperament starting very early, and I can see parents being legitimately worried that an ADHD, ASD, or other diagnosis could limit their child’s access to opportunities down the road.

Who?

I haven’t seen the piece, but my anecdotal experience is that sometimes the parents themselves can feel judged by the diagnosis. I would have thought that a diagnosis would help, because a child who needs extra support for a reason is easier to talk to school and daycare about than a child whose violence or other bad behaviour is unexplained. But apparently not, at least in my friend’s case.

lawyer jane

The problem is that sometimes “bad behavior” does not have a diagnosis. And a diagnosis does not solve “bad behavior” especially in a younger child. The approach to dealing with “bad behavior” in a daycare or preschool setting is going to be the same whether or not you have a diagnosis. But yes, teachers are generally happier to have a diagnosis to explain it.

Dinolindor

I don’t know understand what you mean when you say that preschools deal with bad behavior as part of a diagnosis the same as without. My son’s preschool gladly learned from the public district’s psychologist on strategies for kids on the spectrum for dealing with the “bad behavior” that typical strategies were not helping. They weren’t just happy to have a label – and actually were quite surprised with the diagnosis (I think they expected something other than ASD, but I don’t know what), they were happy to have “continuing education” so to speak. They also were happy to have more ideas for when the next spectrum kid comes in for helping the neuro-typical kids be more understanding in social interactions, besides helping the neuro-atypical.

lawyer jane

I mean that behavioral issues are frequently part of the normal spectrum of child development (even if they are disturbing or disruptive) so preschools should have plans to deal with them. The means and the staffing to deal with this should to an extent carry over to kids with diagnosed disabilities. A preschool staff that values meeting children where they are (whether or not it is disruptive behavior that is part of normal development, or a disability) is going to be in a much better position to help all kids. So what I’m basically saying is that a high-quality preschool will make it its business to help individual children, no matter what their issues are.

Dinolindor

Oh, I see what you’re saying. Yes, I agree and we were able to benefit from such a preschool. (I thought you meant that it doesn’t matter which child, strategies for dealing with disruptive behavior are the same.)

My point about labeling is that kids are labeled whether they have a diagnosis or not. They’re just labeled “slow,” “stupid,” “defiant,” etc.

CharlotteB

I wish I’d been labeled–I finally got an ADHD diagnosis at age 30–I do wonder what may have been different had I gotten help sooner.

CCL (Crazy Cat Lady)

Yes, this is very true.

The Computer Ate My Nym

Hmmm…when I was in grade school, the teachers loved me: I was quiet, I learned quickly (though, honestly, public school in Texas: there wasn’t so much to learn), when I had nothing else to do I just pulled out a book and read. It was all very nice, apart from that I was living a life of quiet despair because I was bored, bored, BORED. Then they started a gifted and talented program. Which I was judged too “emotionally immature” to take part in. And that was that for my chance of better teaching. Would a diagnosis have helped? I don’t know, but having no label certainly didn’t make things right.

lawyer jane

Are you a woman? One of the problems is that only kids with “externalizing” behaviors tend to get identified for special education — whether or not they actually have a real diagnosis. The kids (often girls) who don’t cause any trouble get ignored. Around where I am there’s a strong “2E” movement to recognized gifted and learning disabled kids, too bad you couldn’t benefit! The school environment so often causes problem, or makes them worse.

The Computer Ate My Nym

Yep. And in school I remember being very annoyed with kids who were acting out or failing to settle down when the teachers told us to be quiet because they were getting in the way of getting to the actually fun part of school, which was when the teachers would tell us something new or give us something to read that would tell us something new. Kids in classrooms of 30+ students rarely get into trouble for sitting there and quietly fuming.

Amy Tuteur, MD

Getting the correct diagnosis is not easy in some cases, but that’s not what I was writing about. I’m referring to people who refuse to acknowledge learning and behavioral issues because they’re embarrassed.

The general principle (that your children are not you or extension of you) applies to lots of other situations as well. Just because you dreamed of being Babe Ruth doesn’t mean you should force your child to play baseball. Just because you’re worried about what your own friends might say doesn’t mean you should give a girl dolls when she really wants trucks.

I’ve found that it’s surprisingly difficult to realize that your child is not going to fulfill your dreams and shouldn’t be expected to do so.

Who?

Amen to that.

I’ve taken to the view that the role of the parent of adults is to be delighted, or to shut up. Sometimes (often, even) both at the same time.

If we are unable to fulfill our own dreams it is very hard on our children to expect them to, no matter what time, emotion and resources we pour in. And we can’t expect our children, at any age, to be props in our social world.

Rhybellious

I was very fortunate that my special needs child was not my first. By the time he came along his oldest brother was almost 25 and he had another older brother and an older sister, By that time, I had realized just how little control we as parents have in terms of who our children are and even how they turn out. I had had years of watching friends and relatives with all different kinds of parenting philosophies and skills raise kids. Some of them turned out spectacularly well despite having parents who had serious issues, some despite all the very “best” parenting and all the advantages in the world ended up squarely in the “hot mess” category. Most turned out just fine. I think that this was tremendously helpful to me when I began realizing that my son not only had complex medical problems, but also had developmental issues….

I think that this is one of the most damaging things about the current ideas surrounding the “natural” parenting industry- it sells parents a bill of goods which essentially states that if you do everything right (natural birth, extended breastfeeding, blah blah babywearing, etc…) that your parenting experience will be magical and your child will be a high achieving super indigo amazing prodigy who appreciates all your sacrifices on their behalf.

The problem is that children are not products and parenting isn’t about you.

I’ve seen too many parents deny their children critically needed therapy, not because it was hard to get a diagnosis or because the diagnosis was disputed (although I won’t deny that a correct diagnosis is much harder to get than it should be) , but because they simply couldn’t accept that they had
done everything “right”…… And they ended up with a child who wasn’t what the movement told them they were entitled to expect.

With all that said, I can’t explain how relieved I was when we finally got the medical diagnosis that confirmed his issues were genetic. I know longer had to deal with people asking me if my epidural could have caused it, or the induction or the fact that I fed him elemental formula……

lawyer jane

I found a lot that resonated in that essay as the mom of a child who will most likely be getting an ADHD diagnosis. But I do think it discounts some real concerns. With ADHD particularly it is hard to discount the evidence showing that outside factors lead to diagnoses, like being the youngest in the class. And when you have people unqualified to make diagnoses, but in positions of power (like teachers) that can confuse things even more. While it is true that the “weird” kids may not have been benefitted by the lack of diagnosis in the past, it is also true that any deviation from the norm can in some cases be over-interpreted by school systems pressured to show good test scores, etc. It becomes especially scary to contemplate pressure to medicate your child when there is so much controversy about that.

Sullivan ThePoop

When they discovered my son has a learning disability his teachers were all saying he had ADHD. The doctor sent questionnaires to his school and home. She found enough things that did not point to ADHD that she sent him to a renown behavioral institute which found he takes in information faster than he can process it. This was almost 20 year ago. I do hope that doctors are not just going by the word of teachers or the parents.

Megan

I get referrals from schools all.the.time. for “ADHD” which upon further history, I find is just really trouble with math or some other issue (though sometimes it is ADHD obviously). They like the ADHD diagnosis because it can be medicated whereas many other issues cannot. I also find parents of kids with ADHD are not likely (at least in my area) to ask for/know that they can ask for an IEP. I make sure to tell all of them to specifically request one at school no matter the issue. The school is required by law to do this.

Madtowngirl

As a former teacher, it used to drive me nuts when my colleagues would try to diagnose these things. I mean, there were a few cases where there was clearly some sort of attention-deficit issue, but we were not qualified to make that decision! It’s perfectly fine to bring it up to the parents, and even push for evaluation in some cases, but we are not qualified to make a diagnosis. I remember one case in which a teacher tried to tell a parent that her child had autism. Like seriously, lady, perhaps try a little classroom management, and little Billy’s “autism” might turn out to be just boredom.

lawyer jane

Dr Amy, are you familiar with the criticism of the DSM – V diagnoses formulation, and psychiatric diagnosis in general? The basic problem (as I understand it) is that unlike medical disorders, psychiatric disorders are defined by a grouping of symptoms instead of any underlying laboratory values. So it would be like if instead of saying someone had a stroke, we said they had “inability to use one side of their body.”

At the same time, since these are psychiatric disorders, I don’t think you can limit the diagnosis to the biological. In many cases — ESPECIALLY with children — the environment and changing cultural norms play a huge role. For example, younger kids in the class being more prone to an ADHD diagnosis; and the rigid expectations of preschool and early elementary school making it hard for boys in general to cope … let alone kids who are anywhere outside of the average on focus, attention, or social skills.

This is why, whenever I hear about a kid struggling with behavior in a daycare, preschool, or early childhood setting, my number 1 recommendation is to consider the setting and whether a different school would resolve the issues. Sometimes, it’s true, you can’t feasibly do this without a “label” that allows you to legally access more supportive environments via IDEA (the federal law that provides special education funding and protections).

I think that the interplay between the environment and culture and psychiatric disorders is exactly why some parents resist a label. They feel like normal child behavior is being pathologized from the outside.

Another factors is that even with the best diagnosticians, and especially for the younger kids, diagnosis can be elusive. Most good docs won’t come near to diagnosing ADHD until the kid is closer to 5-6. Complete neuropsych testing is usually not offered until closer to 7, and is extremely expensive and sometimes not even covered by insurance.

The other big factor is lack of evidence-based treatment. If there were a pill or therapy that worked at high rates of effectiveness, then it would be a no-brainer to seek out diagnoses. But in many cases there is not. Early intervention ABA for autism? Yes, fairly good evidence for that. But then there’s a ton of confusion around things like occupational therapy, play therapy, and the like. And don’t even get started on the ADHD medications issue. To make matters worse, even if a recommended therapy might have an evidence base, it can be *extremely* hard to find practitioners and your insurance probably won’t cover it. Again, IDEA might cover it through an IEP but not always.

Finally, diagnoses for child psychiatric and learning issues have been flipped on their head and are used to access services (via insurance and IEP coverage), not to actually diagnose a child and guide the treatment. As others have commented in this thread, there are many, many parents who find themselves in the position of having to seek an incorrect diagnosis in order to access insurance, IEP services, and the legal protections of an IEP.

Not to mention the fact that the definitions of disabilities used to access the IEP and federal special ed funds are NOT even medical! They are legal/educational standards formulated by lawyers, not doctors. In some cases they dovetail with DSM-V but not always. And the person who decides whether your child has a disability might be the school principal and other non-medical professionals! They have to take into account what your child’s doctors say, but that’s not the last work.

All of these factors lead, legitimately, to parents who might “resist a label.”

For me personally, the solution to all of this is to focus closely on the problems rather than the labels. If I think a certain treatment is going to help with the problem, then I’ll take a label if I have to access it. But I’m sure as hell not going to go around broadcasting that label because it is almost meaningless, and prejudice and labeling exist. Tell a teacher “My son can get frustrated and rigid, especially if overstimulated and in big groups, and this leads to aggression”? YES. Tell a teacher, “My son has ADHD and maybe very mild ASD”? NO. At this point that would be useless.

Gatita

That was a great summation of all the issues. Thank you. Totally agree with this: For me personally, the solution to all of this is to focus closely on the problems rather than the labels.

Sue

It must be frustrating for you, but diagnosis in developmental areas is so much less precise than in other areas of medicine.

It might not be reassuring while you are in the midst of it, but my take on it would be that your son is much better off in this era of diagnostic complexity than he might have been in a past era of diagnostic simplicity, where words like “delay” (or less PC language) covered everything.

Most people with strong opinions are trying to do their best to help kids in an area where evidence is still poor. That’s no excuse for pushing you, though. If they can’t persuade you that their approach is based on whatever evidence is available, or that they appreciate your priorities and needs, you are right not to go with them.

Gatita

I’m actually okay with ambiguity. But I have a huge problem with someone who insists they are right and refuses to acknowledge that there’s conflicting opinions and that my son doesn’t fit easily into any boxes. For example, the current clinician is insisting my son has ADHD. Other people have said my son may have ADHD but it’s hard to tell for certain because he’s also anxious which can cause ADHD like symptoms. We tried him on an antianxiety medication which he’s doing very well on.

Meanwhile, the doctor has had us try three different classes of ADHD meds and my son has reacted badly to all of them. From what I’ve read if a child flunks several meds the clinician should reconsider the diagnosis. But this doctor is refusing consider that possibility. I’m just aggravated at this point. I’m willing to go down this med path a little longer but every med trial so far has been awful for my kid and at some point I’m not going to keep banging our heads on the wall. Anywho, that was a tome but I’m frustrated!

Sue

The anxiety explanation sounds plausible.

As a general principle, “if your treatment that normally works for a certain condition isn’t working, re-think your diagnosis” is a sound one.

Best wishes for some positive progress!

Anne Catherine

I’m so sorry you are going though all of this. I can’t even imagine how frustrating it all must be. I hope that things start to improve–good luck to you.

Gatita

Thank you! I really appreciate your kind words. I try to remind myself that in the grand scheme of things it could be much worse. There’s no question that he’s going to grow up to live on his own, fall in love, have a career. During our journey we’ve met parents who can’t say that about their kids so I try to remember that when I’m tearing my hair out.

J.B.

I’m sorry. The right clinician for you is such a subjective thing. My daughter is in a similar place, on anti-anxiety, and every psych/etc has talked about impulsivity. Her developmental ped has not given her the ADHD diagnosis because she may settle as she matures. Even if she is diagnosed we would wait as long as possible for ADHD meds due to side effects.

Are you seeing a psychiatrist or a developmental ped? I would seriously consider seeing someone else if you can. Also it’s a little woo-ish but are you in occupational therapy? They focus on desensitization and can give some coping strategies.

Gatita

We are seeing a dev ped at the moment plus a psychologist. He also gets OT through his school but we’re taking a break at the moment. Life is kind of crazy at the moment but in a few weeks when I have a chance to breath I’m definitely looking for someone new.

BTW, so good to hear from a parent whose kid has similar issues. It can get lonely when you don’t fit into a box.

The Computer Ate My Nym

I was diagnosed with probable ASD as an adult. (It’s almost impossible to confirm a diagnosis in an adult because the clinician can’t observe development.) It’s a weird place because somehow it’s BOTH a disorder so severe that death is better than risking it AND an overdiagnosis in someone who clearly only needs to be kicked in the butt a few times to get them to straighten up. I understand that I’m horrible and ruining society, I’d just like to be able to figure out whether I’m too sick to tolerate or not at all sick and just hysterical.

I know that’s not what you’re saying, but I get triggered a bit by the term “overdiagnosis” because so many people use it to denigrate people with mental illnesses, especially those in the neuro-atypical “miswired” category.

Gatita

I hear you on over diagnosis. It’s definitely used as a club to beat up supposed helicopter parents.

Having said that, ASD is overdiagnosed in some groups and not diagnosed enough in others. For example, a poor black kid who is tantruming in class and hitting other kids is more likely to end up in juvenile hall that they are with an autism diagnosis. On the other hand, you have kids who are not neurotypical but not necessarily on the spectrum who are getting ASD diagnoses because that’s the magic key that unlocks services. The problem with that is that services that help ASD kids aren’t necessarily going to help a kid who’s got something else going on. It’s so confusing and you have a lot of parents who are trying to do the right thing and can’t figure out what the right thing is.

Plus all of the stigma and attitudes that you are talking about make it even harder on everyone. I have plenty of sympathy for parents who say screw it and stay out of the diagnosis Merry-Go-Round altogether.

Sullivan ThePoop

I have an acquaintance whose daughter got severe head trauma when their deck collapsed. They sought out an ASD diagnosis because there are hardly any services for head trauma in children. Apparently the autism services have been very helpful.

Gatita

See, but that makes me crazy. I’m glad it’s helping their daughter but we shouldn’t create a system where one category of impairment gets all the goodies and everyone else is screwed.

Sullivan ThePoop

Yeah, it shouldn’t be that way but there are definitely more children with ASD than children with head trauma.

lawyer jane

Yep. Also, if there were a magical pill or surgery to treat ASD, then overdiagnosis might be less of a concern. But there’s not.

Another issue is the schools. In our short experience, schools and teachers are absolutely willing to scapegoat behavior that might be atypical but still within the range of normal, and call it a developmental disability. We are now basically in the position of having to seek out a diagnosis for our son … just so we can get the school to deal with him in a reasonable way! Some teachers and principals have the attitude that they will not address any behavioral issues without additional support, and they don’t get that support unless it comes from IDEA. Surprise surprise, when we switched our child to a more age-appropriate and less stressful private preschool, all of his disruptive issues literally disappeared overnight. There’s still something that makes him different from other kids, maybe — but it’s not disrupting his education now because he’s in a place where they consider it their job to meet kids where they are.

Gatita

“We can’t handle your kid so there must be something wrong with him. It couldn’t possibly be us.”

Squillo

We are now basically in the position of having to seek out a diagnosis for our son … just so we can get the school to deal with him in a reasonable way!

Which is ridiculous, but given the way public education is funded, with special ed being a separate and separately (not) funded service, understandable.

A specific diagnosis should not be the prerequisite for a child receiving services or accommodations that enable him to receive a free and appropriate public education. Those services and accommodations also shouldn’t depend on how well his parents can advocate for him. Simply getting a diagnosis can be impossible for parents without a lot of resources.

lawyer jane

Exactly, understandable but still wrong. One thing I’ve learned about on my journey is a newish approach called “Response to Intervention,” which makes a whole lot of sense to me. Instead of insisting that a kid get a diagnosis before accessing any sort of support, the idea is that you engage in a tier of increasingly intensive supports BEFORE you go the full evaluation route, collecting and responding to data long this way. Of course, this requires resources … but I think in the end, probably saves resources instead of requiring that the kid totally fail before they can access any help.

The Computer Ate My Nym

That pretty much covers it. I have the feeling that there are a whole host of “non-neurotypical”…things for lack of a better description, that people have and no one yet knows exactly how to deal with so they all get pushed into the ASD or ADHD category because those are the labels we have, but that the actual underlying issues vary widely. Not even to mention the problem of poor kids in underserved areas getting no diagnosis but being labeled as “lazy” or “violent” or even just “dumb”.

Heck, even in good school districts, lack of training and understanding of the issues can be a problem. My daughter got labeled as a “slow reader” in first grade. To the school’s credit, they did attempt to give her general extra support in reading. The problem was, they failed to notice that she was extremely dyslexic and simply couldn’t decode the squiggles on the page into words. Specific therapy for dyslexia took her from a less than grade level reader to 3 levels above grade level to reading adult books in 3 years. At 13, she is now reading adult books in 2 languages and writing novellas. Which would not have happened without the specific therapy for dyslexia. Note that the school she was going to was considered one of the best elementary schools in NYC. And it was not a bad school, but they completely missed the curve on this problem.

baileylamb

That’s true to a point, but even when a minority child is diagnosed they still revive harsher punishment in school (inclung being handcuffed by police even a very young ages).

Gatita

PS regarding people’s attitudes about autism, the only thing I can say is fuck them. Do you remember the news recently that an incredibly sophisticated ancient Greek computer was discovered? As in the thing is thousands of years old? My husband and I were joking around and that it was definitely built by autistic dude who spent all of his time tinkering in a room solo and then came out with this incredible device years later and astounded everyone he knew.

The Computer Ate My Nym

Or everyone she knew. If they paid attention.

Chant de la Mer

Yeah the over diagnosis thing is super frustrating. We aren’t dealing with ASD but with ADHD and let me tell you, that diagnosis gets the shaft big time. It’s not a “big” disorder, so there isn’t much in the way of services for it, plus there is a lot of stigma and judgement about the behaviors from it. At least here where I live. So many people go on about how we’re just medicating normal behaviors, and I”m like no no these are not normal behaviors and no my son and I can’t just be more responsible. Our brains don’t work normally so we can’t just do some things without a lot of other steps to keep us on track. Yeah medication helps but there are side effects and we can’t really be medicated 24/7 and also the medication creates a dependance for sure but kinda like a diabetics is dependent on insulin not like an addict with their drug.
I have some young patients with autism, they are nonverbal and thus are getting a ton of services from the school district so no one ever says boo about their diagnosis. But I bet if they were more neurotypical there would be a lot more muttering about kids just needing discipline.

J.B.

Replied below and then saw this. If you’re near a university, is there anyone non-university affiliated who you can see? Sometimes there is a concentration of providers in the area, and some outside of the academics might be a little more laid back. This world of is it anxiety, ADHD, autism, etc etc is very weird. Best wishes.

Gatita

Good idea about non-university affiliated. That is definitely doable. And yes, it’s all extremely weird! Have you noticed that so many people who work with kids have issues themselves or have family members with issues? Too many of them see things through their personal lens and have trouble seeing the kid in front of them.

demodocus

Certainly noticed it about fellow university students studying social work or psychology.

Dinolindor

I’ve been curious about the other side of treatment plans. In that, how many of the parents of kids on the spectrum are adults who should have been diagnosed? I feel like that would impact how guidance and plans are internalized and then put into practice at home.

Dinolindor

I just want to say, solidarity sister. While ADHD is clearly off the table for my son, figuring out exactly what to do for ASD that is pretty mild or even borderline is ridiculous. The inconsistency on the course of action is maddening. His preschool and the public school district’s psychologist have been wonderful (fingers crossed for his transition to kindergarten with new teachers and new psychologist in the fall), but at the same time the doctor who diagnosed him suggested ABA therapy. His preschool director said ABA is terrible and would be such a bad fit. But no alternative strategy aside from whatever the public district’s psychologist trained the teachers with. Another private therapist thinks he just had an off day when he was diagnosed, no matter my insistence that I watched the evaluation and he was himself. The year before we had a different private company come out to our home for services and they were horrendous – and wanted to do 25/hours/week. For a kid who others don’t even believe the diagnosis. That was the main time that I felt like labeling might be a scary thing, because while I think naming things has great power to do good, the stigma is still there for others even among the supposed white hats. And then figuring out where people who you’re trusting your kid with stand, to see if they think their job is to help the kid “pass” for neurotypical versus create strategies to work in the world we live in versus making the outside world conform to his weaknesses. Oh, and then before I knew better and would try to give people a heads up on his diagnosis (like a new teacher at gymnastics or a camp counselor) and the overwrought “I’m so sorry” and “sympathetic” look, like it’s the worst thing that could happen to a family. There are challenges, especially when my son is particularly inflexible, but it’s not like we have this awful life, or that he won’t grow up to (as you put so well later on in this discussion) live on his own, fall in love, and have a career. I just wish there weren’t so many extra hurdles or red tape or stubborn people in positions of power to get in the way of guiding my kid through his education and life in general.

Gatita

And then figuring out where people who you’re trusting your kid with stand, to see if they think their job is to help the kid “pass” for neurotypical versus create strategies to work in the world we live in versus making the outside world conform to his weaknesses.

Hell to the yeah. I flat out told our dev pediatrician that I don’t want my son to be normal and I don’t want him to lose his awesome (because he is soooo awesome). I just want him to stop tantruming at school. Weird is good. Weird is wonderful! Too many people in services world want to sand off all the rough edges. Screw that.

Yes! That’s exactly the problem I run into also. I don’t want my kid to be some automaton who can’t be true to himself. I just want him to be able to function within expected social rules without flipping out or isolating himself from everyone. He makes so many amazing connections between ideas that I sincerely believe is because of his wiring, and to lose that or make him think that’s bad or wrong would be awful.

lawyer jane

I love this conversation 🙂 For our kiddos, I feel like part of the problem is that childhood is SO incredibly examined under the microscope these days! Kids can’t just be kids with quirks (or disabilities). They have to fit into a mold, whether that mold by NT or the disability mold. And childhood in general is conformist. As adults we can chose what to do, how to work, who to socialize with. As a child, there are huge outside structures pushing you into pre-determined activities and social situations.

Gatita

Childhood is SOOOO conformist, it makes me crazy.

Dinolindor

Yes! And if you’re not going to conform then you have to be anti-conformist in the *right* way, which makes no sense!

Squillo

This.

And of course, kids develop, mature and change, so the thing that seemed to help one year no longer does, which makes it a merry-go-round of constant testing and refining.

KeeperOfTheBooks

Baby Books, Second Edition arrived Friday and, along with his mommy, is doing well. He came via RCS a few days after his due date. I was a little sad to not be able to VBAC, but not willing to accept the increased stillbirth rates after 40 weeks, and a good thing, too. When my OB got to him, he paused, said “Whoa, two tight loops of cord around his neck, no wonder he never dropped” followed shortly by “Mom, your uterus is paper-thin here. Good thing you didn’t labor with this one, and you aren’t going to with the next one, either.”
The hospital was a BFH, but was mostly common-sense about it. A lactation consultant showed up in the recovery room, but when I said “Thanks, but I’m bottle-feeding” confined herself to saying, “No worries, here’s my card if you change your mind, and congratulations!” One nurse asked if I’d be interested in trying nursing, but backed off as soon as I said “no.” No hassle at all about getting plenty of formula.
Not having a night nursery was difficult, though I had a support person with me. One nurse very kindly took baby for 3 hours one night so we could sleep, though, and baby’s a very good sleeper anyhow. (I don’t even want to imagine how rough those nights would have been sans support person, though.) We’re resting and recovering at home, big sis is fairly pleased most of the time about her baby brother, and life is pretty good.
Lastly, I really appreciated how seriously they took my concerns about PPD, which I had last time. I’ve been started proactively on an antidepressant, and the medical staff arranged for a social worker to help me put together a plan for treatment and prevention. Hopefully, things will go better this time ’round!

AllieFoyle

Congratulations!

Roadstergal

Congratulations on your little one!

Monkey Professor for a Head

Congratulations!

yentavegan

Congratulations! So happy everything went well.

demodocus

Congrats!

Who?

Wonderful news, congratulations!

BeatriceC

Congrats!

guest

Congrats!

Charybdis

Congratulations, and welcome, Baby Books II!

Megan

Congratulations!! Sounds like things went better this time around and for that I’m so glad for you. Enjoy the snuggles! Glad he’s a sleeper!

Deborah

Congratulations and refreshing to hear of your positive experience in the health system! Enjoy your family 🙂

Amazed

Congrats! So happy for you for having: 1) A healthy lovely little one and healthy self; 2) a positive birth experience. In that order.

Welcome, Little Precious Edition!

fiftyfifty1

congrats!

Gatita

Congratulations! And kudos for taking care of yourself and being a good advocate for your sanity.

Congratulations, and welcome to new Baby Books! 🙂 Take care of yourself and enjoy the kiddos.

MI Dawn

Welcome Baby Books Second Edition! May all the Books have fun!

Madtowngirl

I’m late to the party, but congratulations! I’m so glad your experience was good in the BFH.

carovee

Six factors are related to delayed lactation, including maternal age of
30 or older; being overweight or obese; larger-than-average baby weight
(greater than 7.9 lbs); absence of nipple discomfort on days 0 – 3; and
infant failing to breastfeed effectively at least twice in the first 24
hours.

Holy S**T, I was six for six with my kiddo. If this information had been available to me I would not have spent the first week hellishly trying to exclusively breastfeed while my baby starved. No I would not have been scared. I would have been INFORMED.

fiftyfifty1

“larger-than-average baby weight (greater than 7.9 lbs)”

Wow, that’s not even a macrosomic baby. It really is an average weight baby. So by definition, 50% of women are going to be at increased risk due to this factor alone.

Gatita

Huh, that really is interesting. Like maybe babies are getting bigger but women’s capacity to produce milk isn’t keeping up. So we may be seeing increased rates of “low” milk production and women who can’t exclusively breastfeed. That sounds like a study that needs to happen (but won’t because of politics).

Who?

I wondered about that-interesting. It certainly puts that 5% figure someone was proposing into perspective.

Kelly

I am just surprised that a lactivist would even say that certain women would not be able to produce as much.

Anne Catherine

yes –good for her. this is a first step

Angharad

Wouldn’t all (or almost all) mothers of a brand new baby have a disturbed circadian rhythm? I know I gave birth at 3:00 am, and then was awakened every 2-3 hours to have blood pressure checked or to feed the baby.

demodocus

Pretty much.

Young CC Prof

In fact, if you look at the detailed stories of breastfeeding problems that turned into emergencies, extremely exhausted parents is usually part of it. Does exhaustion interfere with milk production? Maybe, it’s plausible. But the far more dangerous effect is preventing the parents from realizing something is wrong. Doctors’ newborns are winding up in intensive care from insufficient intake. The parents didn’t see it coming because by the time the child started to go downhill, they were too tired to realize anything at all.

Who?

Same as when everyone’s got the flu or similar. Sick mum is too ill to realise child is really sick. My parents bailed us out of a situation like that years ago, came over, took one look and took us all to the doctor.

That is precisely why they become exhausted. The unfortunate consequence is that they become too exhausted to stop or even realize that an emergency is developing.

Tori

I understand now- I wouldn’t have trouble breastfeeding if I hadn’t used fertility treatments. Of course, I wouldn’t have had a baby, but I wouldn’t have trouble breastfeeding.

Samantha

You are correct in that a growing percentage of women are physically unable to produce enough milk to feed their infants, due to insufficient glandular tissue (IGT) or some other underlying physiologic cause. In addition to the monitoring you suggest, many of these issues can be avoided by prenatal screening for risk factors for low milk supply (prenatal breast exam to identify IGT, thorough history of breast development before & during pregnancy, surgeries, fertility, thyroid function, etc.) & counseling on the possibility of low supply. If more OBGYNs were able to do this prenatally, instead of only “relentlessly promoting breastfeeding”, women that are at risk for low supply can be closely monitored during those early days so that if milk supply is not adequate, baby can be supplemented/fed to avoid dehydration, jaundice, brain damage, etc. Often women are struggling with breastfeeding or concerned about their infant’s intake, but the hospital staff are just patting them on the head & telling them to keep trying, it’ll get better. Then when baby comes back for their early well-baby check, dehydrated, bright yellow & lethargic, everyone goes into crisis mode, breastfeeding is blamed & the mother feels like a failure/like she is to blame. When breastfeeding is encouraged & promoted to all, but HCPs lack the knowledge & training to do more than just that, babies suffer & women are left feeling like failures/guilty for failing at breastfeeding. Prenatal breastfeeding education, coupled with skilled assessment & support both prenatally & immediately postpartum, would go very far in preventing infant injury or death due to inadequate intake.

Amy Tuteur, MD

Sorry, it isn’t OBs who are relentlessly promoting breastfeeding; it is the lactation industry. They are the ones responsible for the growing number of iatrogenic injuries and deaths due to exclusive breastfeeding.

Samantha

Which lactation industry? I am an IBCLC & rarely see/interact with anyone prenatally; it’s usually after one of the iatrogenic injuries. I would honestly appreciate your take on prenatal screening/exam for potential low supply to avoid complications related to low supply.

Amy Tuteur, MD

The lactation industry of which you are a part.

fiftyfifty1

Prenatal screening/exam is not going to fix the problem of iatrogenic damage. Why? Because although it is true that certain risk factors make it even more likely there will be lacational failure, a woman can have no risk factors at all and still not produce enough milk. Lactational failure is common and frequently occurs without warning.
This is why we need to stop pushing this idea of exclusive breastfeeding, stop demonizing formula supplementation, and start supplementing liberally.
Stop gaslighting moms and torturing babies.

Gatita

But I still think it’s a good idea to ID mothers in advance who are unlikely to be able to exclusively BF. That way they can decide whether they want to try at all or combo feed before they are exhausted and in a hormone daze with a screaming baby to deal with. Also, all mother/babies need to be closely monitored in those early days regardless of feeding method to ensure the baby is handling feeding well (some babies can’t digest milk proteins and will need special formulas, for example). I think Samantha’s suggestions are pretty sound.

fiftyfifty1

Sure, it would be nice to know ahead of time so a mom can have realistic expectations. But actually ALL moms need to have realistic expectations; breastfeeding fails frequently, risk factors or no.

And that’s where I differ significantly from Samantha. Her answer to iatrogenic injury is to prenatally find “women that are at risk for low supply [so they] can be closely monitored.” The truth is that ALL women are at risk for low supply and ALL women need to be closely monitored. I have seen low supply happen even to women who had had abundant supply with earlier babies.

We need to stop demonizing supplementation for ALL women, rather than just find the high risk ones prenatally so they can have months to prepare themselves for the “harm” they are going to do to their babies by “ruining their guts” and feeding them “shit in a can”.

Who?

I wonder if the lactivist community would treat prenatal diagnosis of likely low supply like some birth hobbyists treat other prenatal care-‘if we don’t test for it, it won’t be a problem’?

Gatita

Of course they would! But it should be part of the overall prenatal evals. If you’re taking someone’s health history and they tick off certain boxes the OB can initiate a conversation with the mom.

Who?

Sounds like a plan!

The Bofa on the Sofa

I contend that the biggest barriers to identifying risk factors for breastfeeding issues are the LCs of the world, who run around denying that anyone has breastfeeding issues and spend their time trying to coerce everyone to breastfeed. Because, you know, women were designed to do it and all that crap.

When lactivists are spouting the “everyone can breastfeed, just keep swimming” cheers, who will listen to the doctors and their scaremongering?

So what I’d say is, Samantha, that if you want this type of information to happen, then you need to start with your own.

Call me an idiotic academic living in my ivory tower, but I would think that this would be exactly the kind of questions that LC research should be addressing. Basic questions of understanding, as opposed to “feed and pump more.”

Why aren’t LCs doing it? Samantha?

Sue

I suspect that’s not exactly what Samantha is saying.

People who do antenatal screening look for all sorts of risk factors, but don’t automatically discount unanticipated complications when they occur. A healthy young women could be excluded from having risk factors for GD or PIH pre-natally, but still gets her blood pressure monitored post-partum, especially if she develops symptoms.

Why not accept at the pre-natal stage that things can go wrong in all sorts of ways?

Maybe I’m missing something, but I don’t see any harm in what Samantha proposes.

fiftyfifty1

No, that’s not what Samantha is saying. She claims that women without identifiable risk factors rarely have problems producing enough milk. The truth is that the *majority* of women who have lactational failure/delay do NOT have any of the “biggie” risk factors that she scolds OBs for failing to screen for.

The truth is that OBs already do screen for the “biggies”. They already know when their patients have had breast surgeries, have snoopy deformities, PCOS etc. And they tell them that they may have trouble breastfeeding. But that doesn’t change the fact that lactation consultants still tell women that low supply is vanishingly rare and can be overcome by “doing it right”. And it doesn’t change the fact that the Baby Friendly Hospital Initiative that lactation consultants push demonizes supplementation and that hospitals are rewarded for exclusive breastfeeding rates on discharge for the *entire* population of women, no opt-outs based on risk.

Sue

I would argue that Samantha’s approach is the reason we do antenatal care – to identify and mitigate risks.

It doesn’t have to mean that problems are ignored post-natally. On the contrary, it helps normalise them.

I support Samantha’s approach – I think we may have misunderstood what she is saying.

If every IBCLC could understand that “When breastfeeding is encouraged & promoted to all, but HCPs lack the knowledge & training to do more than just that, babies suffer & women are left feeling like failures/guilty for failing at breastfeeding. Prenatal breastfeeding education, coupled with skilled assessment & support both prenatally & immediately postpartum, would go very far in preventing infant injury or death due to inadequate intake.”

(as Samantha said). Makes sense to me.

Samantha

Yes Sue, that is the point I’m trying to make- screen prenatally like we do for other things to help understand risk & prevent injury. Screening is not treatment & doesn’t mean all women are capable of breastfeeding let alone will choose to. I didn’t realize I was dancing around saying some babies need supplementing (as another commenter said)- they do, that is the reality for some women, even if they intended to only breastfeed. In my professional experience, it is those women that come to me totally broken & exhausted because they planned to breastfeed, are trying to make it work, and the first glance I have at their breasts reveals classic, visible signs of igt, & a history of PCOS/infertility/some hormonal issue that is a risk factor for low/no supply. *I* am the one that has to tell them they likely won’t be able to reach their original goal. If they had been screened prenatally, they could’ve been prepared & maybe reframe their goals, & prevent stress/disappointment & possible injury to baby during the process.

fiftyfifty1

As I state elsewhere, I don’t disagree with the idea of doing prenatal screening, but I DO disagree with Samantha’s assertion that that is going to be the “fix” for the iatrogenic problem. The majority of women with lactational failure and/or delay do not have any obvious biological abnormality. They are normal healthy women, just like Dr. Christie del Castillo Hegyi was.

Samantha gives lip service to education and support, but she still scare mongers about supplementation. We need to destigmatize supplementation. There is no evidence that supplementation in the days prior to milk coming in reduces supply or “ruins” anything.

Well that depends on what you mean by “underlying risk factors”. In your post you say that iatrogenic harm could be avoided if OBs would just red flag the obvious severe risk factors such as prior breast surgery, congenital lack of breast tissue, and major hormonal abnormalities (thyroid, lack of any pregnancy breast change etc). And sure, these women are likely to have trouble. But lactation failure and/or delay are common even without these risk factors. Dr. Christie del Castillo Hegyi had none of these risk factors. And her baby is profoundly damaged. Neither did 2 of my close friends whose babies were readmitted for hypernatremic dehydration. 40% of primips have delayed lactation. Calling that “pretty rare” is gaslighting.

Now, on the other hand, if you want to liberalize the definition of “at risk” I would wholeheartedly support you in that! If that is the case, we need to be calling all primips at risk. We need to call all mothers over 30 at risk. All overweight or obese mothers. Babies above 7.9 lbs. The list goes on and on. If you exclude all THESE women (and that’s the vast majority of women) I will concede that lactation failure rarely occurs in the tiny remaining cohort.

I’ve seen quite the opposite. I practice in an area with 2 major immigrant groups. One traditionally puts baby to the breast for colostrum, but “tops off” each feed with formula until milk comes in. The other group believes colostrum to be bad and doesn’t put baby to the breast at all until milk is in. You can imagine the fits this gives the IBCLCs! And yet both groups go on to have extremely high exclusive (except for that first week) long term breastfeeding rates.

Stop the scaremongering about supplementation.

Charybdis

See, this doesn’t help at all. Because if you are “properly screened” for IGT or “other underlying cause and everything checks out as “fine, no problems/issues identified” then you are also fighting against screening/test results that show there is nothing wrong with your breasts. You just need to try harder, different holds, have some herbs, teas or medication to help increase milk supply, have your baby on your breast 24/7, check the latch, check the latch, fix the tongue/lip tie, get a SNS, get donor milk or casually “milkshare” with another lactating woman, power pump, etc.

By “doing something” to identify women with underlying risk factors, you are harming those who have idiopathic lactation failure or who do not produce milk with enough calories for their babies to thrive. Because by showing them that they, in fact, do not have IGT, thyroid issues, etc, then that just adds to the guilt, frustration and exasperation felt by the mothers. They are looking for HELP and often times that help comes in the form of formula supplementation or switching completely to formula, along with the LC telling them that formula is perfectly fine and their baby will do just fine on formula. Basically, the “Breast is Best” propaganda has been beaten into us for so long, that often, we NEED someone in an authority position (doctor, nurse, LC, PA, CNM, etc) to give permission to stop trying to breastfeed.

yentavegan

Samantha, please be brave and stay here and read every post with an open mind. We ( and I mean you and me) are by products of the “back to nature” ” womens’ special way of knowing” ” our bodies aren’t broken” pseudo-science passing for professionalism. I have learned so much by staying up to date on the blog and I realize that as a lactation educator/peer counselor assumptions about lactation /the importance of lactation/ the benefits of lactation/ the superiority of lactation were based on biological elitism borderline eugenics….

Samantha

Sorry yentavegan, my foundation is not based on pseudoscience. Those that are do not help our profession one bit, & put babies & mothers at risk.

yentavegan

Then you are the exception to the rule. In my experience I have yet to come across a Lactation Consultant ( other than the ones who are also RN’s working L&D) who do not promote CST, bodywork, herbs , laid back nursing, etc

Silver

Well, that’s nice, but support in the moment for moms who aren’t having success is a thing that is sorely missing. So. Much. Shaming. Also, you need to take into account that not every woman has the luxury of sitting around feeding a baby for a good part of her day, because they have to work to feed other children, or are caring for an aging parent, or other reasons. And finally, I would like to say that I got exactly zero support from the lactation people after my second son died. I walked around in pain, wearing tight sports bras with cabbage leaves in, for almost a year, because my granola girlfriends said that would work and I was in pain and didn’t know what else to do. I still feel twinges of letdown when I hear a baby, 15 years later. Would have been really great if someone in the lactation biz had reached out and given me something, anything, even just to express some sympathy, but apparently that’s not on the menu.

CSN0116

Oh, please. Pigeonholing prenatal women into “at risk” categories for lactation failure for intervention purposes would be seen as undermining breast feeding, counterproductive, and fear mongering. That logical shit would fly in medicine but this is lactivism we’re talking about here.

I’m not sure how you practice as an IBCLC, but your fellow warriors have created a clusterfuck of ridiculousness. Good luck.

Samantha

In my experience, the few times someone was aware of potential supply issues in advance, it was great. The mothers were prepared, had realistic goals, & sought help & support early & often. We screen for lots of things during a pregnancy, why not ability to feed the baby you are now gestating??

MI Dawn

Samantha: how about the mothers who have no intention of breastfeeding at all? Those are the women who are really abused and hurt by the IBCLCs. (Including one woman who posted a blog post about the numerous LC’s who gave her a hard time – *after a double mastectomy for breast cancer!!* – for not breastfeeding).

carovee

I’m not sure what you are saying. This article is about low/no milk supply. No amount of skilled assessment is going to change those six risk factors. Unless you are suggesting that health care workers need to do a better job of identifyin women who are (or are likely) to have low supply encouraged supplementing, I don’t see those suggestions as being any help at all.

guest

I think she means that if we screened better there wouldn’t be any infant injury and death due to inadequate milk supply (so yes, that must mean encouraging supplementing for those women), and therefore we should still be able to promote breastfeeding aggressively. Or something.

Sue

You are spot-on, Samantha.

In the past we didn’t do ante-natal screening for post-natal depression, now we do. Instead of waiting for women to become disabled with depression and need hospital admission, we can assess and mitigate risks. That;s how health care should work.

Antenatal care is all about assessing and mitigating risks. Just like we don’t just trust the physiology and anatomy of delivery to work, we shouldn’t just trust the physiology and anatomy of lactation to work.

And you are also correct that mitigating risk might include being prepared for the need for supplementation, if not full formula feeding.

swbarnes2

I feel like this is written very confusedly. If by “issues” you mean “permanently low milk supply that will never grow enough to totally sustain a baby” well, no, there aren’t good treatments for that. Some crappy unregulated supplements, some drugs with serious potential side effects, that’s about it.
If by “issues” you mean all the babies returning to the hospital after starving for a couple of days, screening and counseling aren’t treatment protocols. You have to have LC’s telling women “Since I haven’t measured your baby getting any milk yet, you are going to have to supplement before you leave the hospital.” It’s not clear to me how many in the current pool of LCs are prepared to say this. You yourself seem to dance around the idea without actually saying it It seems clear to me that many LCs greatly overestimate the benefits of breastmilk, ascribe wildly mistaken ideas of the dangers of formula, and combine that with a sort of “just world” fallacy, in which no virtuous women who tries hard enough can possibly fail. If the women who believe all that are taken as the highest authority in infant feeding, no amount of pre-natal screening is going to overcome that.

fiftyfifty1

“It’s important not to let information scare us.”

Huh?! If facts shouldn’t be allowed to scare us, what should?

Sarah

Scaremongering, obviously!

Roadstergal

C-section rates.

Gatita

That jumped out at me too.

MaineJen

“It’s important not to let information scare us.” Translation: don’t think about it and it won’t happen. Just like c sections. Right?

Tori

But if you don’t think about it, it can’t happen. Our minds are so powerful that we can cause bad things to happen, just by thinking it.

AirPlant

so… If I were say planning formula from birth do you reckon I could think my boobs into never producing milk? I hear engorgement is a bitch.

Tori

Maybe! Of course, I thought I’d have enough milk and I didn’t, but maybe I just didn’t trust the process enough. 😉

Angharad

Well at the very least it should diminish your supply! If a woman who fully intends and wants to breastfeed can think herself into supply issues, a woman who doesn’t intend to breastfeed should surely be able to think herself out of engorgement.

CSN0116

I fucking wish! By the fifth kid I had the concoction of ephedrine, ice, and tight bras down enough to only have to struggle through 2-3 days of agony, but damn… thinking away the milk does not work. That shit sucks, actually. There needs to be a safe alternative to dry up milk quickly for women who experience infant loss or just don’t want it there in the first place.

Sue

Wow – you must have had a perfectly-preserved circadian rhythm! With five children, including a new baby, that must have been quite an achievement!

MI Dawn

There used to be a medication (back in the early 80s) that we gave women. Problem was, it wasn’t really effective and, IIRC, about 50% of women had lactogenesis and engorgment about a week after finishing the meds. So we quit giving it and just recommended decreased fluids, tight bras and ice.

CSN0116

I’ve heard of the practice back in the good ole days. My mother had it and said it worked wonders, but I heard rumors it was later linked to cancers or some such thing. Regardless…
Someone needs to get on that shit, like yesterday. We need an invention! 😉

Megan

I usually suggest Allegra D with both antihistamine and decongestant in it. Sounds like you did the best you could, but I guess you just didn’t think enough negative thoughts. 😉

Kelly

Nine months later I still have milk. I wish it would just go away.

Jennifer

Is it true these types of dehydration deaths didn’t happen before the bfhi? I am sincerely asking.

Kaiser, out in California, has seen a dramatic rise in babies needing phototherapy for jaundice in recent years. Are they doing a better job of diagnosing it, or a worse job of preventing it?

Roadstergal

Is Kaiser big into BFHI? I wouldn’t be surprised – they’re the king of non-interventionalist cost-savings in other forms of health care, and breastfeeding is so very ‘in’ in NorCal.

Megan

IIRC, they are the ones that created a few really obnoxious breastfeeding promotion ads and are a BFHI system.

yentavegan

Moms used to go home from the hospital with swag bags of infant formula. So perhaps these prevented the injuries we are seeing now…

Anne Catherine

http://www.ncbi.nlm.nih.gov/pubmed/22348493
Here is another one–it’s out of Taiwan–the first sentence reads::
“The incidence of neonatal hyperbilirubinemia in our hospital has increased since the implementation of breastfeeding promotion”

Being a first year driver
Exhaustion or disturbed circadian rhythm
Certain medications
Inadequate vehicle maintenance

Most severe accidents involve one or more of these risk factors, so avoiding them is a better path to safety than wearing a seatbelt.

Irène Delse

I once read a historian describing ideologies as “long-term prisons”, because it’s so difficult to get out of a way of thinking, and we tend to keep them long after they were proven false or (at best) had outgrown their utility.

Here, we have an intelligent woman clinging to the idea that “breast is best for everybody” even while discussing clear, proven cases where breast wasn’t best. At least, she doesn’t avoid the facts, true, but she rewrites the story in the service of her ideology: for her, the take-away lesson isn’t that “breastfeeding isn’t perfect”, but “to protect breastfeeding, we need to find ways to make women lactate more”.

We recently moved to a new city, and yesterday I took my 4 month old to her 4 month check with a new doctor. We quit breastfeeding because it was too much work for my baby girl, and I pumped for about a month but that was too much work for me. It was so refreshing to hear the doctor say “Similac babies are healthy babies,” and when I told him we were using Costco’s brand because it is a lot cheaper, he said basically that anything made in the U.S. is basically the same and totally fine. Apparently he has a lot of Mexican patients who want to buy formula from the Mexican marts, and this he discourages because if it wasn’t made in the U.S. he can’t guarantee that it is up to standards, and often sees babies fed with this formula get salmonella.

Gene

I saw one again on my last shift. Lost huge amount of birthweight, crying, etc. But happily sucked down a bottle of formula and was then snoring away blissfully. Father asked me if we had any formula samples (it was the middle of the night). I gave him ten bottle of ready to feed. Screw baby friendly! I want baby (and parent) healthy!

T.

Oh, the Quacks are at it again.
After all in quackery, if it doesn’t work is because YOU aren’t doing it properly. From the Gherson protocol to breastfeeding, it is always YOUR fault.

Roadstergal

“infant failing to breastfeed effectively at least twice in the first 24 hours.”

I’m sure this is going to turn into ‘It’s even more critical than we thought to have immediate skin-to-skin and breastfeeding!’ rather than, well, delayed/overall poor milk production is going to mean you’re not going to breastfeed effectively at least twice in the first 24 hours. Cause/effect always goes in the way that works for their ideology.

Also, absence of nipple discomfort. Sigh.

MI Dawn

While I’m not a huge fan (at all!) of MAM, I have to give her a little bit of credit. Yes, she does seem to say it’s all the mother’s fault. But she does admit she had trouble nursing her first child and supplemented with the evil formula. She also stresses that *feeding the baby* is what is important – donor milk, formula, pumped milk – not exclusive breastfeeding at this point.

And I think that’s one thing we all agree on: the most important thing is that the baby needs to be fed.

carovee

Didn’t MAM hide the fact that she supplemented for a long time. I vaguely recall some confessional like post. It might have been someone else though.

AirPlant

I think that was the leaky boob…

MI Dawn

I don’t know. I rarely look at her site; she gives me pain.

Amy Tuteur, MD

Dr. Amy Tuteur is an obstetrician gynecologist. She received her undergraduate degree from Harvard College in 1979 and her medical degree from Boston University School of Medicine in 1984. Dr. Tuteur is a former clinical instructor at Harvard Medical School. She left the practice of medicine to raise her four children. Her book, Push Back: Guilt in the Age of Natural Parenting (HarperCollins) was published in 2016. She can be reached at DrAmy5 at aol dot com...
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